Suggestions of good sources on the background to the ME saga, PACE, etc. up to the new NICE guideline

[Haveyoutriedyoga]

This thread has been split from the NICE guideline discussion thread.

I have a friend interested in doing a PhD in knowledge mobilisation, (lack of) information transparency, power and (lack of) coproduction in the UK healthcare sector.

What is the best one stop shop that explains the ME saga, ie PACE, NICE guidelines dev, instances where people have tried to suppress knowledge and evidence, subversion, complaints about too much reliance on patient input, etc?

I know there are a number of blogs, I'm just not sure where to start. Thanks in advance.

 

[Kitty]

What is the best one stop shop that explains the ME saga, ie PACE, NICE guidelines dev

I think @Jonathan Edwards might still be writing it...

 

[Arnie Pye]

I have a friend interested in doing a PhD in knowledge mobilisation, (lack of) information transparency, power and (lack of) coproduction in the UK healthcare sector.

What is the best one stop shop that explains the ME saga, ie PACE, NICE guidelines dev, instances where people have tried to suppress knowledge and evidence, subversion, complaints about too much reliance on patient input, etc?

I know there are a number of blogs, I'm just not sure where to start. Thanks in advance.

David Tuller's work on virology blog and elsewhere?

 

[Ebb Tide]

George Faulkener's 2016 report for The Centre for Welfare Reform "In the Expectation of Recovery" gives an overview on issues with the PACE trial:

https://citizen-network.org/library/in-the-expectation-of-recovery.html

 

[MSEsperanza]

I have a friend interested in doing a PhD in knowledge mobilisation, (lack of) information transparency, power and (lack of) coproduction in the UK healthcare sector.

What is the best one stop shop that explains the ME saga, ie PACE, NICE guidelines dev, instances where people have tried to suppress knowledge and evidence, subversion, complaints about too much reliance on patient input, etc?

I know there are a number of blogs, I'm just not sure where to start. Thanks in advance.

Good to see that there's interest in the topic.

Not sure if suppressing evidence is a major part of it though. I think it's more a distortion of evidence and knowledge and denigrating of patients' justified criticism. With The Lancet and the BMJ major medical journals contributed to this distortion of evidence and denigration of criticism, as did Cochrane.

Faulkner (see @Ebb Tide 's post above) I think is the best source to start for understanding the wider political influence.

Regarding the denigration of patients' criticism the discussion here is also relevant:

https://www.s4me.info/threads/the-i...-coffi-2018-katz-et-al.2013/page-2#post-36407

and following posts.

Brain-fogged so apologies if off-topic.

Will post some resources I find useful later.

Edited / wording.

 

[MSEsperanza]

I think @Jonathan Edwards might still be writing it...

While we're waiting for that and in addition to David Tuller's series on virology blog and George Faulkner's work, a couple of Jonathan Edwards' writings since 2017 are a good account, including submissions, e.g. to the Scottish Parliament if I remember correctly .

Wasn't there a website you started to set up a while ago, @Jonathan Edwards ?

 

[MEMarge]

The last, or penultimate video of " Dialogoes for a neglected illness covers this in just over an hour.

https://www.dialogues-mecfs.co.uk/films/the-tangled-story-of-me-cfs/

@Natalie may well have good contacts/resources. There's also Keith Gerahty, Tom Kindlon and Brian Hughes.

 

[Colette]

I have a friend interested in doing a PhD in knowledge mobilisation, (lack of) information transparency, power and (lack of) coproduction in the UK healthcare sector.

What is the best one stop shop that explains the ME saga, ie PACE, NICE guidelines dev, instances where people have tried to suppress knowledge and evidence, subversion, complaints about too much reliance on patient input, etc?

I know there are a number of blogs, I'm just not sure where to start. Thanks in advance.

There is also Margaret Williams back catalogue http://www.margaretwilliams.me/
This might be a good starting point http://www.margaretwilliams.me/2001/what-is-me-what-is-cfs.pdf
or Corporate Collusion

 

[Kalliope]

What is the best one stop shop that explains the ME saga, ie PACE, NICE guidelines dev, instances where people have tried to suppress knowledge and evidence, subversion, complaints about too much reliance on patient input, etc?

If you're looking for something newly written and short, just to get the headlines of the story, George Monbiot's article was a pretty great summary:

https://www.theguardian.com/comment...g-covid-when-will-ministers-take-it-seriously

 

[Natalie]

THIRTY YEARS OF DISDAIN by Mary Dimmock and her son https://www.dropbox.com/s/fkyl3uyr9x6twyh/Thirty years of Disdain - Summary.pdf?dl=0 the short version is very useful background too.

 

[Haveyoutriedyoga]

Thanks all, these are really useful, and thanks Trish for creating a post!

If I find the power to curate a summary for the friend in question then I'll share it here.